FAQs: Online Resources

There are several different resources and online platforms that can help you connect with individuals or families. Some conditions may have a Facebook group where people can connect with one another. Other conditions may have their own organization or registry with their own website. Some of the most common resources that we direct families to are listed below:
• https://rarediseases.org/
• https://rarechromo.org/
• https://everylifefoundation.org/
• https://geneticalliance.org/
• https://newbornscreening.hrsa.gov/
• https://www.cdc.gov/newbornscreening/
• https://medlineplus.gov/genetics/
• https://www.facingourrisk.org/
• https://www.cancer.gov/